The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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what can be if there is no PEM?

Discussion in 'General ME/CFS Discussion' started by notmyself, Dec 28, 2017.

  1. notmyself

    notmyself Senior Member

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    What other disease share this symptoms?..i have most of the ME /cfs symptoms..all of them are milder than most of people here, but still they ruin my life..I don't have PEM even after strenous activity like cutting wood with an axe for 90 minutes..or playing table tennis for 3 hours, ..i used to run in the past and still there was no pem..feel bad same symptoms but didin t increase , fatigue remain at the same level, maybe even dimished a litle with exercise..So what i have if is not ME.?!..i don t even know what treatment aproach to take since i have no clue what going on..
     
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  2. JES

    JES Senior Member

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    It could still be CFS/ME depending on how strictly you define the diagnostic criteria. There is not one set of criteria that there is consensus on. I haven't experienced PEM ever (other than "mental PEM" as in brain fog after meetings), but I have fatigue, neuro symptoms, POTS, etc. I read in one study that there is a distinct difference in signature of this disease between men and women. Women typically had amino acid levels much more depleted than men (who have more muscle mass by default), so there is a difference in how the body compensates for the issue depending on the sex. Can't remember the exact result, but it was from Fluge & Mella.
     
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  3. Tally

    Tally Senior Member

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    According to ME/CFS Initiative, these are some common diseases similar to ME/CFS:

    Autoimmune diseases
    • Dermatomyositis
    • Lupus erythematosis
    • Reiter’s syndrome
    • Rheumatoid arthritis
    • Sarcoidosis
    • Sjongren’s syndrome
    • Vasculitis
    Gastrointestinal diseases
    • Celiac disease
    • Crohn’s disease
    • Irritable bowel syndrome
    • Ulcerative colitis
    Endocrine diseases

    • Addison’s disease
    • Diabetes mellitus
    • Hyperthyroidism
    • Hypothyroidism
    • Ovarian failure
    • Panhypopituitarism

    Neuromuscular diseases

    • Muscular dystrophies
    • Multiple sclerosis
    • Myasthenia gravis

    Psychiatric diseases

    • Alcohol/drug abuse
    • Anxiety disorder
    • Depression
    • Hyperventilation syndrome
    • Manic-depressive illness
    • Schizophrenia
    Other diseases

    • Dysautonomias
    • Narcolepsy
    • Sleep apnea
    • New or recurring cancer

    I would add Mast Cell Activation Disease and Small Fiber Neuropathy.

    Some of these illnesses here are common comorbidities with ME/CFS but since you don't have PEM. you don't have to worry about that. Fatigue is basically the most common symptom there is, so it really doesn't narrow down the possibilities much. Use your other symptoms for clues of what it could be.

    If it's just fatigue hypothyroidism and sleep disorders should be first suspects.
     
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  4. Tally

    Tally Senior Member

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    You are right that some people might have mild PEM so they don't even recognize it, but being able to play sports for 3 hours and feeling a bit better after running like @notmyself does can't be ME/CFS no matter which definition one uses. Heck, even Oxford criteria which is useless for diagnosing ME/CFS requires significant decrease of pre-illness activity levels.
     
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  5. Runner5

    Runner5

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    PNW
    Fatigue can be almost anything. I even knew a carpenter once who worked with a lot of treated lumber, he had arsenic poisoning.

    Definitely get a CBC and full work up from your doc if you haven't already. I knew a kid at college who was always fatigued, he started sleeping in the art room, he always had to be sitting. He had heart failure but because of his young age and routine, he had no idea at all. For my Dad he has a low red blood cell count and anemia. It really does vary all over the place.
     
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  6. TenuousGrip

    TenuousGrip Senior Member

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    One of the big problems is that there are just so many relatively rare diseases and doctors really aren't trained to keep them in mind.

    You might try using an online symptom checker to see what differential diagnoses it gives. Then -- by looking up more information about the possibilities that seem to fit -- you can decide which, if any, make sense in your case.

    Best of luck !
     
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  7. andyguitar

    andyguitar Senior Member

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    South east England
    I would be interested to know who gave @notmyself a diagnosis of CFS or ME. I have to agree with @Tally and say it's not CFS or ME.
     
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  8. HowToEscape?

    HowToEscape? Senior Member

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    If no PEM, not M.E. Be happy about that, because if you have something else, it may be treatable.

    There’s one caveat: there may be such a thing as pre-M.E. That is, one has mysterious episodes of fatigue and brain fog for no apparent cause, which are not accompanied by any particular mood or thoughts, just a severe slowing sensation, not accounted for by plug sugar swing for other known conditions. I have that years before I got M.E. Subjectively it seems to be an early stage of the disease, but without PEM it was not ME at that time.
    But right now you don’t have it. You don’t want it, trust us on that.
     
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  9. Learner1

    Learner1 Professional Patient

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    In addition to the excellent list above, candida in the gut can produce brain fog and fatigue. So can toxicity with heavy metals, organophosphates, mold, etc. And nutrient deficiencies, like amino acids, B12, etc.. And a low grade chronic infection.

    You'd need tests specific to these problems, as a CBC is unlikely to show much.
     
    Mary likes this.
  10. andyguitar

    andyguitar Senior Member

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    Yep @HowToEscape? makes a good point here. CFS or ME is not always sudden onset. 3 patients I got to know very well had a slow drift down to illness. Couple of years is not unusual. So be careful.
     
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  11. PinkPanda

    PinkPanda Senior Member

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    I also don't get extended crashes. I worsen from exertion so much that I have to stop, I've never tried pushing past that point. I do feel worse for a few hours sometimes, but I never really crashed much longer than that.
    A while ago, at the beginning of my CFS, I also still had a pretty good exercise tolerance.

    I haven't found any other disease I have yet, and although I have food intolerances, histamine intolerance, 'adrenal fatigue', I didn't improve substantially by treating any of these problems.

    I would say, try to rule out other diseases as best you can, but I don't think it's impossible to have CFS that doesn't fit the standard ME picture perfectly. PEM is not a requirement for all CFS criteria.

    And if you find you have some disease, that is better treatable, good for you!
     
    Learner1 likes this.
  12. junkcrap50

    junkcrap50 Senior Member

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    • One point I would like to highlight is that you can have MENTAL PEM and not physical PEM, which makes it appear as if you don't have CFS/ME.
    Early in my disease, my CFS was primarily cognitive dysfunction. I could still exercise and exert myself but thinking, studying, reading, etc. was very difficult and I would feel much worse after doing it. I often wised I had the opposite problem: physical fatigue, but mental clarity.

    • The level of exertion and strenuousness of your physical activity may be too low to cause PEM. A milder case of CFS/ME may have a higher limit for PEM.
    I could and would be able to cause PEM if I pushed myself very, very hard - above my fitness level. Often it would occur when doing pull-ups halfway through or towards the end of my exercises. Occassionaly it would occur when doing squats and deadlifts with little rest in between. CEPT testing shows that CFS/ME individuals have lower VO2 max and lower aerobic/anerobic thresholds. I would imagine the sicker the person, the lower the thresholds. Thus, if you're mild, you may not be reaching these thresholds, and when passing them, causing your PEM.
     
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  13. pattismith

    pattismith Senior Member

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    I think this list is good but not comprehensive, you could also add some mitochondrial diseases and some channelopathies.

    There is so many diseases that should be investigated before a CFS/ME diagnosis is done that it is rarely done properly...
     
    notmyself, Rossy191276 and Learner1 like this.
  14. Stretched

    Stretched Senior Member

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    I’m wondering about your definition of PEM - “...fatigue ruining my life... .” If you’re getting severe fatigue it seems to me this may indeed be a degree of PEM, e.g. not the debilitating type - yet!

    Try 20 minutes on a stationery bike, pushing the limits like a stress test, and see how you feel 2 days later. If you’re just mildly tired I’d opine that your
    malaise is not CFS. If you feel sick and don’t feel up to any activities then I’d say you’re a likely candidate for CFS.

    I’m 30 years into CFS and don’t dare push like this. However, 20 years ago there was an envelope where I could do 20-30” of moderate activity like
    walking or bicycling and not get PEM. As time went by that envelope shortened and PEM hit with no uncertainty, until now, where on good days I
    might have a short or temporary envelope and be able to go for a drive or a .5 mile walk and not suffer too bad. Beyond that - wham! For me it’s definitely a
    progressive demise.
     
  15. Worried1230

    Worried1230

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    Hi i also joined this site originally believing i had cfs but ive come to the conclusion i no longer have it but i do have some symptoms of it

    Digestive Problems not really constipation i have at least 2-3 bowel movements a day mine is more like a gurgling stomach & i get these kind of throat burps

    Sometimes anxiety like i feel on edge like i wanna jump out my car if im driving

    I dont have any pem as well i am able to exercise just fine & live my life fine sometimes i even feel too much energy lol but i do have adhd my problem seems to be more the digestive issues
     
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  16. HowToEscape?

    HowToEscape? Senior Member

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    For testing purposes, use a treadmill not a bike. On the bike you are sitting which is much easier on us, and the pumping action of your leg muscles may have a slight beneficial effect.

    Also if you can handle standing more or less still for quite a while (such as in a long line) then you likely don’t have this disease, not yet. Another hallmark of us is the delayed response to overexertion. While it’s happening we don’t feel all that bad, the next day we’re knocked out, And then we are dragging for a variable # of days. or weeks after. Severe overexertion can knock us down permanently.
     
  17. nettle_tea

    nettle_tea

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    I didn't start to get PEM from exercise until relatively recently. But I've had PEM from other types of exertion for years. For me, it was more about staying out of the house for extended periods of time, having too many active days in a row, standing up too long (especially in hot weather), or taking long public transit trips. I think orthostatic intolerance was the culprit most of the time. I was able to keep biking 20min to work even when I was housebound outside of work. And before that, even when I was too sick to socialize, I could go out on my bike for an hour on the weekend as long as I rested immediately afterwards. Now, I can't exercise much. But it took dipping into moderate territory (i.e. periodically not being able to walk) before that happened.

    It's possible I don't have ME either, but so far it's the best explanation we can find. But I think it's possible that people get PEM from different types of exertion. Aerobic activity seems to be the classic trigger, but it's clearly not the only one. I wonder - are you experiencing PEM-like symptoms after other activities?
     
  18. Stretched

    Stretched Senior Member

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    @nettle_tea As referenced in the above posts and elsewhere on PR, PEM can be just as bad with anaerobic activity as aerobic. Some key triggers for me are driving longer than a baseline amount; reading too long; conversation too long, et al. They seemed to have developed for me after a good while with CFS.
     

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